Routine and then some

Kinetic sculpture by Arthur Ganson at the MIT Museum

Kinetic sculpture by Arthur Ganson at the MIT Museum

When I wake up in the morning I wiggle my toes and then repeat “I’m alive” three times. Then I do a little yoga stretch before I swing my legs over the side of the bed. I pee (doesn’t everybody when they first get up?), mosey on down the hall to the kitchen to get the kettle started for coffee, turn the light on Pete’s aquarium and let our golden retriever Buddy out for his first pee of the day. Joining him outside, I pick the newspaper up from the end of the driveway and gently place it in his mouth. Buddy thens trot back into the house (rather proudly), and drops the paper in the proximity of his food bowl, a not so subtle hint.

Today, as I walked down the driveway I heard one of my favorite sounds:  the call of the wood thrush. My heart soared. On that note, I think it is time for a personal update:  as a good friend pointedly noted, inquiring minds would like to know.

My emotional challenges hardly need delineating. But joy continues to burst through, as sudden and unpredictable as bird song. Sometimes I am actually outrageously happy; full of energy and plans. My stamina and lack thereof do follow a pretty set schedule though. For a day or two following chemo, (and because of the steroids) I fly pretty high. But when I come down, it is precipitous; the sense of fatigue profound.

There are other unpleasant side effects that also set in about day three. I cough a good deal and it feels as if there is a band tightening around my chest (what one friend in my club calls the alimta squeeze). Incessantly watering eyes, scaling skin, and nose bleeds are part of the mix.  My other mucus membranes (all of them) become quite irritated, resulting in diarrhea and mouth sores.

By the second week, I am feeling marginally better on all counts.

Week three—I feel pretty damn good. Then it’s time to do it all over again; I have a scan review tomorrow followed by infusion. I had that scan on Monday, and while in Boston, went on a little outing. My friend Ginger, who is a double digit survivor of lung cancer but now battling a new, unrelated cancer, made arrangements for the two of us to go to lunch at Flour and then to the MIT Museum in Cambridge.

We had a fine old time, and asked a member of the staff to take a commemorative picture of the two of us, in which, Ginger appears to be a mini me. We’re sporting exactly the same hairstyle at the moment, although she is far less gray. Our smiles are quite similar. However, although Ginger never thinks of herself as petite, either she is, or I am very large. Like I said, a mini me. So where’s the photo?

Well, it wasn’t very flattering; just didn’t capture our inner beauty—I think it might have been the lighting. So, we’ll just have to take another one the next time we are together. Promise.

19 responses to “Routine and then some

  1. I love love love reading your words and feeling your emotions. You are a Beacon of inspiration to me, someone who is fully alive! Thank you. …….

  2. m.ustis@yahoo.com

    Hi, been following U for yrs. never posted before. I am sorry for Sarah’s recent death. The Love of my Life, Maria, lost her 50 mth battle of LC,EGFR mutation, last Nov. she was a non smoker, was diagnosed 8/08@ age 56. You have been in my prayers for years & I will continue. We created a team, MyMaria in BJALCF phila walk in 2012 & I pushed Maria in a wheelchair.That was 10/13 & on 11/3 she entered UofPa hospital for severe breathlessness. She entered heaven on the 14th. I will say a special prayer for U for ct results. Nate

    Sent from my iPho

    • Nate, I am so sorry for your loss and I thank you for your prayers. I am certain Maria lives on in your heart, just as Sarah does in mine.

      Linnea

  3. Sorry that you have not been up to par with your new chemo regiment. Been there and done that too many times. It doesn’t get easier either.
    I do have very good news, however. The CH5424802(AF802) ALK-inhibitor trial drug is working wonders. My brain mets are completely gone and the oncologist believes that this drug can pass the blood /brain barrier, which would be one of the few drugs that does.
    The tumors in my liver continue to shrink and even the bone mets show signs of the bone growing back to replace the dieing cancer cells. The tumor in my right lung is now smaller and no side effects to date. I’m sorry that you are excluded from this trial because of the previos LDK trial you were in. If this works better than the Crizotinib, I don’t see why the FDA won’t approve this drug as quickly as they did Crizotinib. So you hang in there, please. We need you.

    • Larry, what good news you share—congratulations. To hear that the drug is not only sufficiently powerful but also side effect free thus far is fantastic. I wish you continued success.

      I am sort of beyond bargaining with my own cancer—what I’m trying to say is that I have lots and lots of plans and no intention of letting cancer get in the way. Time to put all of my faith in the words if there is a will there is a way.

      Thank you and best to you….
      Linnea

  4. Linnea,
    You have such a way with words…spot on!!! I do remember those chemo days of feeling yucky, feeling better, really feeling good – oh no, time to start all over again. Hang in there. Always thinking about you.
    Take care and stay positive.

    • Hey Roni, this is the no fun part of cancer treatment, but you know what—each cycle I am getting better at managing the symptoms. My eye is on the prize (continued survival) so this is more than doable. Hugs to you…

      Linnea

  5. Outrageous joy. What a gift to find scattered throughout difficult times. My husband has the side effects, but he has weekly chemo, so no recuperation time. But he is still here, and so are you, looking for the joy.
    **blows kisses** Deborah

    • Deborah, once a week is tough but if that is what we need to do, we do it. Still here is a wonder; it never gets old (unlike us—but that is the objective, right?)

      xoLinnea

  6. Dear One, as one of those inquiring minds, it was so good to get this update. It’s good to get any update, whether you are feeling crappy, elated, or somewhere else on the scale of possibilities and you are under no obligation to uplift us, but you do. You just do. You do, however, get to edit any and all unflattering photos.
    Thinking of you today with scan review and infusion.
    love and more love

    • Cristina, the unfair part is that Ginger still looked pretty damn good. Oh well….I’m sure she will look even better in the next photo. Lots of love and time to begin a discussion about a trip west…

      Linnea

  7. Thank goodness for the happy and quiet moment, eh?

    • Thank goodness! (I’ve always loved those two words together—their old fashioned wholesomeness!).

      Linnea

  8. Hi Linnea- I think about you every day, and am keeping up with your blog, glad that you are able to navigate the Alimta. Chris was on it for 18 weeks and did pretty well, but the streaming eyes were an issue, as you are finding. And I am sorry for all your recent losses, coming together in a wretched string.

    I hear ya on the photo opportunity, but wouldn’t mind seeing a fresh depiction of your mug sometime soon.

    Many reams of love
    Joan

    • Joan, you are always in my thoughts as well and I never miss one of your posts—you are such a fine wordsmith.

      Fair warning, I am getting a hankering to pay a visit to your area as well—-it might be time to compare upcoming schedules.

      love, Linnea

      • As I used to say to my aunt and uncle’s boxer, when I was all of two- I’s in here, Jezebel. I would happily arrange and rearrange my schedule for someone so special. Looks like you got spoiled but good on Mother’s Day!

  9. Kathleen Gereghty

    Always to happy when I get your post. Thanks

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